Tampa mother keeps fighting for teenager with rare disease

Justin Narvaez, with his friends at the Bakas Equestrian Center, suffers from the rare Alexander Disease. He has outlived anyone who ever had it. JEFF BERLINICKE

BY Jeff BerlinickeSpecial Correspondent

Published: April 29, 2014

Updated: May 2, 2014 at 11:38 AM

TAMPA – Justin Narvaez could be the typical 15-year-old boy. He can be stubborn, shy, happy, and he loves to ride horses. Pretty typical, right?

Not at all. Justin was an infant when he was given a death sentence. He, and his mother, Sary, along with his brother, Austin, refused to accept it.

Justin has made it further in life than any child who has ever been diagnosed with Alexander Disease. No one, according to records, has ever made it to the age of 15. The average age of death is about 3 years old. Justin has had some close calls along the way – and some scary seizures – but he keeps on fighting.

Justin is, simply, a miracle. Born with the very rare disorder of the nervous system, Alexander Disease is a group of disorders, called leukodystrophies, that involve the destruction of myelin, the covering that insulates nerve fibers and promotes the rapid transmission of nerve impulses. The end results include seizures and developmental delay. Since 1949, approximately 500 cases have been reported, worldwide.

Justin will probably never walk. He can't communicate except for words that come out rarely and always brings tears to his mother's eyes. He'll never go to school, and he gets frustrated sometimes, but he fights through it.

He rides horses, with assistance, at the Bakas Equestrian Center, which works with children with special needs. Justin might not be able to speak, but he communicates with his eyes, and they light up when he is at the farm.

His mom works out of the house and Austin, 13, is home schooled. Sometimes the money for treatments is there, sometimes it isn't. She has spoken all over the world to doctors and legislators about stem cell research. The best help she could find was in China. In a battle for her child's life, she isn't afraid to say what is on her mind.

“According to every doctor, he was supposed to be dead by now,” Sary said. “I've done a lot and plan to do more. I contacted President (Barack) Obama to look for ways for better stem cell research. Life is hard enough for anyone, even the ones who don't have this disease. Somebody needs to do something about it. I had to go to China and cry like a baby. But it's tough to find help (in America).”

As Justin watched a movie with his brother, Sary went on.

“It's a disgrace that there's hardly anyone to help,” she said. “All they told us is that he would never make it four years. One doctor told me to just go home and enjoy my son while I had him.”

Sary said she relies on her faith. She is nondenominational, but said it gets her through the day as she deals with one bureaucracy after another. She refuses to treat Justin like a victim, or even as someone with a potentially deadly disease that is barely on anyone's radar.

“I try not to cry anymore because I have cried enough,” Sary said. “But I have two beautiful boys and crying won't help. His disease doesn't make him who he is. My job is to make him happy. There's no pity. All we can do is know that for now, we are living in a world of miracles.”

Austin is much more mature than most at the age of 13. He cleans, bathes, feeds, and changes his older brother. On the times that Sary has to head out on errands, Austin takes over. He knows exactly what to do in case of one of Justin's seizures.

“Sometimes, when we are out, people seem to be afraid of him,” Austin said. “He's a regular kid. He stares at girls and he isn't afraid of anyone. Sometimes when I see people stare at him for no reason, I just stare them right in the eye. They still stare, though. They aren't used to him.”

Austin, who is determined to be a pilot, knows he can't be with his brother forever, but he's determined to stay at home with Justin, even if it means missing out on regular social activities most teenagers his age enjoy.

“Sometimes we are just trying to hold on as a family,” Sary said. “But every once in awhile, something nice happens and makes us smile again.”

Justin smiled a lot when the Make A Wish Foundation rewarded the family with a Disney cruise. Justin had the time of his life. He has to be prompted to smile, but when he does, it almost brings Sary to tears.

It's been a struggle, but Justin has made it further than anyone believed. With his mother and brother by his side, they plan to continue the fight for as long as possible.